choosing between a stoma or a neobladder?

Hi chefmike . i went a different route so not much help but let me welcome you to the group. We have members here who have experience of this and should be along to share when they pick up your post. Best wishes.

Hello Chefmike,

My husband was diagnosed with the same cancer in May 2022. He was much older than you (71) but with incredible good physical condition.Due to an error by the oncologist, he received only one cycle of chemotherapy because of kidney failure)

In August he had surgery (11 hours ) with construction of a neobladder. Before the intervention he discussed with patients who had either stoma or neobladder. He is very satisfied with this recconstruction. Just bear in mind that you'll need to get up every 3-4 hours during the night (otherwise there's a risk of neo-bladder distension).The urologist was able to perform a nerve sparring surgery in order to have the best chance of erection recovery. But also with this technique some men are left totally impotent for the rest of their life.

We are lucky because after one year and the help of viagra my husband has good erections. It is necessary to be patient and keep intimacy with your partner also right after the surgery when penis is totally flaccid.

I wish you all the best

Catherine

Hi chef Mike,
I was 53 in 2020 when I had my bladder and prostate removed and opted for a NeoBladder.
We are all different but I was/am pretty fit and not overweight, so recovery from the 10 hour op wasn’t too bad.

I was back at work (office based) after 2 months and golfing within 3.
It did take 6 months or more for Neo to fully bed in, but I now have zero incontinence day or night. Initially I set an alarm to wake me 3 times a night, but now I get a fullness urge and wake naturally and never have any leaks. It’s nearly exactly the same as before.

I too had nerve sparing and my sex life is the same as it was (no viagra, pump or injections ever needed) apart from, of course with no prostate, no ejaculation. The feeling is the same though.

I am a big advocate of Neo, but equally many are equally pleased with their stoma.

Ask if you have any specific questions.

cheers
Chasam

Hi Chefmike,Welcome to the group.I have had a stoma for nearly 4 years.I haven’t found it difficult to adjust to and lead a full life.I did find the recovery hard and extremely slow.I was able to return to work 8 months post op as a full time carer for my late mum.I had to have 2 additional carers to help out though.I wasn’t in good shape physically before the op due to how advanced the cancer was.I think this affected the speed of the recovery.It helps to be fit beforehand.I hope you find the group helpful.There is a lot of support and advice so do ask questions .There is usually someone with the experience to answer.Best wishes Jane 

Hi, I'm female with neobladder & very happy with it 12 years on. Things may go very well (as with Chasam) but you do need to be prepared for the worst! There is likely initial incontinence during the 'training' with neo. This can last months, to some extent, to gain good control and as Cimafa says, you have to get up at least once a night forever more to empty. That is what I found hardest. Nights are harder to gain control than daytime. I still wear a pad at night in case of leaks, as I don't set an alarm.

You might be required to learn to self catheterise (depends on consultant's preference) & there is a small risk of needing to do this on a regular basis. ( Bigger risk for females, but I have to self cath & don't mind it at all.)

Having said all that, once the training is done, neo is low maintenance and closest to normal function. There is more potential for complications so worth having an expert, experienced surgeon. Whichever option you choose, you will be able to pick up daily activities & leisure pursuits. I was 57 at time of op & needed full 3 months before going back to work, but did start going out to leisure activities at 6 weeks. Best wishes making your decision.

Hello Catherine   My husband is the same age as yours. He's fit and healthy, and up until the bladder cancer diagnosis never had any health problems.. When we  saw the surgeon, who did the TURBT he never mentioned the option of a neobladder just the BCG vaccine of the Cystetomy. We are still waiting to find out why. Have you an further info as to why you were offered the neobladder?

Many thanks

Hi Cotton,

My husband had a muscle invasive bladder cancer. For this type of tumor BCG is not an option (just proposed for non-muscle invasive).

Neobladder is proposed when the patient needs a cystectomy if he is in good physical condition and if it is technically possible which is not always the case, depending on anatomic configuration

I hope I answered to your question

Catherine

Catherine  Thank you so much for your reply. Barbara

Hi Barbara,As Catherine says neo bladder is not suitable for everyone.I had 34 yrs of Interstitial cystitis before cancer and my surgeon didn’t think it would be right for me.After so many years of pain I much prefer living with a stoma.Jane x

Thanks Jane for your reply. Best wishes Barbara